8-year-old's condition has him forever starving

That's reality for 8-year-old Chase Grey. He was diagnosed Prader Willi syndrome when he was just a few weeks old.

"I was in denial for a couple days. I thought 'There's no way, he's my beautiful baby boy. There's nothing that can be wrong with him,'" Robin Grey, Chase's mother, said.

Prader Willi is a congenital disease that comes from a mutation of the 15th chromosome and only affects one in every 15,000 people.

Because Chase is always hungry, the food in the house has to be locked up. The fridge is tied down, and the pantry has a padlock.

"Nothing can be left out. The counters are clean. The older he gets, the more desperate he will get for food and eat anything that's out - including cat food. Literally, it all has to be locked up," Robin Grey said. "If you had to go a day or two without food, you think you're starving. Well, that's how they feel all the time."

Dr. Sharon Travers is one of Chase's doctors at Children's Hospital. She says most Prader Willi children are growth-hormone deficit.

"Many children start on growth hormones soon after diagnosis. Chase started when he was just a few months old. Because of that, he is in the normal percentile for height," Travers said. "Without growth hormones, an adult male with Prader Willi would grow to be about 5 feet 4 inches, and an adult female with Prader Willi would be about 4 feet 11 inches."

They also have behavior issues such as extreme tempers, learning disabilities, scoliosis and the males will not be able to reproduce. The majority of adults with Prader Willi are obese, and as they get older, the urge for food grows.

"If left unchecked, they would just continue to eat and eat and eat. This [syndrome] does not allow them to live on their own. If they were to live on their own, they would most likely overeat and have an early death due to obesity complications," Travers said.

Right now, there is no cure for Prader Willi.

"To date, there has been no medication or surgical intervention that has been found to be beneficial, people are still looking," Travers said.

"There's nothing worse as a mom to see your kid in pain," Robin Grey said.

So for now, all Chase's parents can do is closely watch what he eats and makes sure he gets a lot of exercise, and know that each and every day will be like a puzzle, trying to fit each piece with the next, in order for Chase's life to be as normal as possible.

Not only is Prader Willi Syndrome difficult physically and emotionally, it is also financially difficult. It costs the Grey family more than $30,000 a year to support the growth hormone therapy, physical therapy, doctors and so on.